Is POLST already here in Canada

What happens if a patient changes his or her mind: like I was told when Randy alledgedly agreed to a DNR him not knowing what a DNR was, I was told that Randy can't change his mind whenever he talks to me. Simple solution get rid of all DNRs and Advanced Directives and make physicians technicians not instruments of quality of life budget constraints.We will all die in good time and we do not need the state to help us. Life is worth it no matter what.


NDY quoted in Pew Trusts’ Stateline: New End-of-Life Measure Quietly Sweeps the Nation

Posted: 21 Jun 2013 03:50 PM PDT

This week, the Pew Charitable Trusts’ Stateline carried an article entitled “New End-of-Life Measure Quietly Sweeps the Nation.”  The measure described is Physician Orders for Life-Sustaining Treatment (POLST), sometimes also called Medical Orders for Life-Sustaining Treatment (MOLST).  According to the National POLST Paradigm website, POLST originated in 1991, and 14 states had adopted it by 2004, when the National POLST Paradigm Initiative Task Force formed to expand the practice.
This blog has only covered POLST twice, once regarding the Illinois program and once regarding the New Jersey POLST bill.  A POLST is a medical order, signed by a physician, instructing a health care provider about what types of life-sustaining treatment to provide or withhold.  The instruction is supposed to be based on the wishes of the individual or their authorized surrogate health care decision maker.  The National Task Force “strongly recommends” that the patient or surrogate signature also be required, but not all states have adopted that requirement.
A primary concern about POLST is whether an individual’s POLST form actually reflects their wishes, and whether the individual’s wishes are based on informed consent.  Other forms of advanced directives in which people designate their health care wishes are not signed by physicians, so they need to be translated into medical orders to direct health care provider behavior, but POLST is a medical order that is effective immediately.  If you or someone else calls 911 in an emergency, the emergency medical technicians (EMTs) know to look for a POLST form and to do what it says.  If the POLST form says “do not resuscitate”, then the EMT’s are supposed to comply.
The Stateline article briefly but accurately reflects the disability community’s concerns as follows:
Some disability rights groups have focused on the issue of patient signatures. Without one, according to Diane Coleman, president of the disability rights group Not Dead Yet, “How do we know the POLST medical order actually reflects the desires of the individual?”  Coleman worries that depending on how POLSTs are presented, they can make life-sustaining treatments—such as the use of feeding tubes—seem unbearable, even though many disabled people are able to live full lives because of them.
The reporter, Michael Ollove, also interviewed Cathy Ludlum from Second Thoughts Connecticut, and noted that:
Disabled rights groups lobbied successfully against POLST in Connecticut this year.
I don’t know about you, but successful lobbying against a mainstream bill by a disability rights group is not something I read about every day.  Second Thoughts CT developed an effective flyer, researched with citations, to talk about the concerns they had with the bill.  Among other things, the flyer said:
While MOLST is intended for people with about a year to live, there is a real danger that people with chronic and severe disabilities will get swept in as well.  In California, nursing facilities pressured all patients to have a POLST, whether or not they were terminally ill.  Delaware recently suspended its MOLST for similar reasons.  People with years ahead of them are often considered “terminal” by medical professionals not familiar with the disability world.  … Many of these concerns could have been addressed if people with disabilities had been at the table designing Connecticut’s MOLST pilot.
Connecticut’s research was very helpful to me and led me to some additional resources.
The Stateline article was picked up by the Huffington Post, which received 78 comments, including several by Stephen Drake, who went toe-to-toe with other commenters, and myself.  As Stephen noted, “If the patient or surrogate signature isn’t required, this document is less about safeguarding the rights and preferences of the patient than it is relieving some perceived burden of uncertainty on medical providers.”
My comment passed on the information that I got from CT, and connected the dots between POLST concerns and futility policies:
Some problems with POLST implementation have come to light.  Delaware suspended use of its POLST form when it was found that it was being used for people who did not meet the state’s criteria for POLST eligibility in that they were not terminal.  In California, the state protection and advocacy agency issued a report documenting a case alleging that an individual’s physician revised his POLST form to say the opposite of the patient’s expressed wishes to receive life-sustaining treatment.    It is perhaps a little known fact that many states allow doctors to overrule a person’s choice to receive life-sustaining treatment under “futile care” policies.  (See http://medicalfutility.blogspot.com.)  A balanced approach to POLST policy development must take these realities into account.
That last sentence sums it up for now. – Diane Coleman

The following demonstrates that a woman was not in cardiac arrest.  Now it seems the cut off for dying from six months is now one year. The woman was 62 years old.

New End-of-Life Measure Quietly Sweeps the Nation

By Michael Ollove, Staff Writer

Joe Takach talks to his friend Lillian Landry as she spends her last days in the hospice wing of an Oakland Park, Fla. hospital. Many states have adopted a new end-of-life document designed to ensure that a patient’s wishes are respected as death approaches. (AP)

The emergency call came in at 10:47 on a Saturday night: “Woman in Overland Park with difficulty breathing. Code one closest.”
Angela Fera, a paramedic in Johnson County, Kan., and her partner raced to the house, sirens blaring. When they arrived, six minutes after the first dispatch, a man told them that his 62-year old wife had terminal cancer and was unconscious. The paramedics found her sitting upright in bed, ghostly pale with a weak pulse and shallow breathing. Death seemed imminent.
The woman was under hospice care, and had signed a “Do Not Resuscitate (DNR)” order. She had made her wishes clear: She did not want to be taken to the hospital if a life-threatening medical emergency arose.
But the woman was not in cardiac arrest, the situation specified in the DNR order. Protocol required that Fera try to save her life, probably by inserting a plastic tube into her trachea to restore breathing and transporting her to a hospital, where she’d be put on a ventilator. Fera guessed that was precisely what the woman did not want. But the husband felt that his wife’s children—his stepchildren—should be the ones to decide whether to withhold treatment.
“We were completely fighting all our instincts to jump in and save her, but on the other hand we really wanted to do what was right,” Fera recalled.

New End-Of-Life Document

A new end-of-life document, more explicit and binding than a DNR and advanced directives, is designed to clarify patients’ wishes—and spare caregivers such as Fera from facing such wrenching choices.
A “physician order for life-sustaining treatment” (POLST) is a medical order, signed by a doctor or other authorized medical provider. The product of a conversation between patient and provider, a POLST specifies a patient’s goals and desires as death closes in. Unlike a traditional DNR, it covers such medical interventions as resuscitation, hospitalization, use of antibiotics, hydration, intubation and mechanical breathing ventilation.

See POLST Form

Without much opposition or attention, many states have adopted POLSTs. This year, Indiana and Nevada approved legislation to allow their use, leaving only seven states and the District of Columbia without POLSTs in at least some stage of development.
They tend to come in garish colors—neon pink, orange, and green, for example—so they stand out among other documents in a home. People are encouraged to put them on their refrigerators, and paramedics are trained to look for them there. In Oregon, where POLSTs originated in the early 1990s, they are recorded in an electronic registry so first responders can access them online. Other states are moving in the same direction.
Research suggests POLSTs are effective in matching treatments to patients’ wishes. According to one study, patient preferences noted on POLST forms matched the actual treatment—or non-treatment—in more than nine out of 10 cases.

Vague or Irrelevant

Dr. Susan Tolle, one of the creators of POLST and director of the Center for Ethics in Health Care at the Oregon Health and Science University, said DNRs and other end-of-life documents tend to be vague or irrelevant to many medical situations. In many cases, they are signed by somebody whose authority may be in question during a medical crisis.
“We needed a portable system of actionable medical orders that would follow the patient and be consistently respected across settings of care, whether that was in a long-term nursing care facility, home, hospice, the ambulance or an acute care hospital,” Tolle said.
POLSTs are often confused with advanced directives, but they differ in significant ways. An advanced directive is often completed by a healthy person, and is purely hypothetical. It lacks the  medical authority of a physician’s signature.
By contrast, a POLST is completed by a medical provider in consultation with the patient. POLSTs are geared toward severely ill patients who are expected to die within a year. According to Tolle, the most common triggers for completing a POLST are when someone begins hospice care, is admitted to a skilled nursing facility or is discharged from the hospital where they had a DNR order.

Some Are Wary

All states require a medical provider to sign a POLST. In most, the signer must be a physician, though some states allow other medical personnel, such as nurse practitioners, to sign it. Most states also require the signature of the patient or a designated surrogate but some, such as Oregon and New York, do not.
Some disability rights groups have focused on the issue of patient signatures. Without one, according to Diane Coleman, president of the disability rights group Not Dead Yet, “How do we know the POLST medical order actually reflects the desires of the individual?”  Coleman worries that depending on how POLSTs are presented, they can make life-sustaining treatments—such as the use of feeding tubes—seem unbearable, even though many disabled people are able to live full lives because of them.
Disabled rights groups lobbied successfully against POLST in Connecticut this year.
In Texas, Wisconsin and Florida,  opposition to POLSTs has come from Catholic groups. Edward Furton of the National Catholic Bioethics Center worries that in cases where POLSTs do not cover the exact circumstances of the moment, denying care may be akin to euthanasia. “When you look at the POLST documents, they don’t take into account the circumstances that the person is in at that particular time and place,” Furton said.
Nonetheless, there is no monolithic Catholic position on POLST. POLSTs have received strong Catholic support in some states, including California and Louisiana.
“This is not about ideology or religious views,” said John Carney, president of the Center of Practical Bioethics in Kansas City, which has worked to bring POLST to Missouri and Kansas. “This is about dignity and making decisions about what I want about my own life.”

Fera’s Choice

At the scene of the emergency in Overland Park a year ago, Fera the paramedic had to act fast: She asked the husband of the unconscious woman to summon his stepchildren and a nurse from the hospice service. Then she directed the fire crew to use a bag valve mask to help the woman breathe for a short time.
When the woman’s children and the nurse arrived, they quickly confirmed that the stricken woman had repeatedly said she didn’t want to be revived in such a situation. With that assurance, plus approval via radio from an emergency room doctor, Fera and her partner left the woman at home in the care of the hospice nurse. They drove off, certain that the woman’s end was near, and fairly sure that they had acted according to her wishes.
Fera is grateful that she is less likely to face similar situations in the future. In the year since responding to the call in Overland Park, Johnson County has adopted POLSTs. “To say we like it,” she said, “is an understatement.”

Issues:

Health

13 June 2013

I went to the food bank this morning.  The story of my future life.  Food banks and the insecurity of rental housing.

1 400 grams of Ccheerios box
1 411 grams of Oroweat Cinnamon Raisin muffins\
2 bottles of water
1 Eastmore brocooli sprouts 60 grams
400 grams of Danone Silhouette yogurt refreshing apple flavour
1 can 540 ml dark red kidney beams
 106 g of Gold Seal small shrimp can
4 medium-small apples
2 medium onions
5 medium-small potatoes
candy canes from Christmas

I spoke to Randy today and he wasn't all that alert.  I showed him a $20.00 bill and he did not know what it was and he allowed it to fly away in the wind.  If Randy concentrates hard enough he can catch things with his right hand.  This I learned when I threw a small plush toy at him when he was in VGH so many years ago. the  months he spent in VGH in isolation with hospital acquired infections.

7:30 pm  Randy was anxious about something and so I gave him a letterboard.  He spelt JAC and then I remembered from yesterday I had washed his jacket and he wanted it.  I washed it but it was still in the washing machine as I forgot to take it out of the washer to put it in the dryer.  His memory astounds me at times.  At other times there is nothing there.  Like I asked him if he went to physio today and he couldn't remember.  

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Off to City hall

On Wednesday Randy and I ventured to City Hall on Cambie to pay the doggie liceences.  This City is so expensive.  It cost $88.00.  Randy had a good day yesterday and he was very alert.  I wish he was like that every day.  He wanted me to take him to see his lawyer but I couldn't as it was late in the day.  As we passed a medical supply store he kept pointing to a pair of crutches in the window.  I wish I knew for certain that Randy will never walk again but I don't.  During the three years Randy has been at GPC I only talked to Dr. Dunn three times.  Two being sixty second sound bites and another time he glossed over Randy's file neglecting to mention he had code blues and also a recent heart attack.  I suspect he isn't even familiar with Randy's medical condition.



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The medical establishment is in control

Doctors Deny Lifesaving Care for Canadian Patient, Say Quality of Life Too Low

by Wesley J. Smith | LifeNews.com | 6/6/13 10:59 AM
Bioethics pushed personal autonomy to the forefront of medical decision making, helping forge the legal right to say no to unwanted life-extending care. Today, if a person doesn’t want to be in an ICU or to be otherwise kept alive with medical treatment, the patient or family can say no. And that’s generally a very good thing. Indeed, without the right to say no, the hospice movement would never have materialized.
But what about patients who want to say yes to such care? Increasingly, patient autonomy is becoming a one-way street. If you want to die, fine. That decision is sacrosanct. If you want to live, well doctors and bioethicists get to make the final decision. This is sometimes called Futile Care Theory or medical futility.
Futile Care Theory is as much about money as it is about benefiting the patient. It is also about honoring the subjective views of doctors and care givers–even at the expense of rejecting a patient’s specific request for efficacious treatment, that is, treatment that would or could achieve the desired medical result of extending the patient’s life.
Now, in Canada (yet again), we see a case in which a patient stated he wanted to be kept alive but the doctors don’t want to comply.

This mindset trickles down to denying quality of life medical treatment to the rest of us when we become seriously injured.
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Victorious for Five

I felt victorious for all of five minutes today.  I went to see Randy and the curtains shielding Amy from human contact were open.  I could not believe it.  After all these years finally these dangerous curtains which provided a blind spot so Randy could not be seen by the nursing staff were open.  My victorious feeling only lasted a few minutes as I asked where was Amy and was told that she was at VGH and would be back and the curtains were only opened because housekeeping had just cleaned her space.

Randy is in a high risk open ward but he is mostly hidden behind curtains.  He has an ABI and he can't or won't use a call bell provided it is even given to him, he can't call out for help as he can't talk, he has a trach, and since the residents at GPC will  never to be productive members of society, care is cosmetic.

If you are of the 80% of the population that are currently in good health and have a future, you will be looked after by our health care system..  If you part of the 20% who are marginalized (i.e. not in good health and no quality of life), your care will be less than optimal.

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Read This

Public Comment by Marilyn Golden, Policy Analyst, Disability Rights Education and Defense Fund (DREDF) Before the Institute of Medicine Transforming End-of-Life Care Committee 
May 29, 2013
I’m Marilyn Golden, Senior Policy Analyst at the Disability Rights Education and Defense Fund. We’re a leading national law and policy center on disability civil rights.
We have many concerns – –the common thread is the many stories we hear from people with disabilities, again and again, illustrating that our lives are seen as less worth living than others——so much less that health care providers too often think death is the correct course.  They press this viewpoint on us, our families and sometimes even overrule us when we disagree.
Let me tell you a true story about a young disabled woman who worked for the Center for Disability Rights in upstate New York. At the age of 19, she’d had a car accident . . . . While lying in a hospital bed on a ventilator . . . doctors would ask her mother if she was ready to “pull the plug”.  ”Why would I want to do that?” she would ask. The doctors answered, “What kind of life will she have—she won’t be able to dance, walk, work, have a social life, or be independent.” Over and over.
Terrie had a rough time medically, but eventually, she was spending hours a day off the ventilator and the doctors were still asking if she wanted to live with this condition. If she chose no, they would keep her off the ventilator and she would die, with morphine for comfort.
When she returned a year later, with a power wheelchair and no ventilator, the doctors’ jaws dropped to the floor and their eyes began to fill with tears. They always meant well and thought they had been doing the right thing.
Today Terrie is still working for disability rights and has a darling young daughter. We’re so glad she had the wisdom to go against her doctors. 
A related problem we see in the end-of-life field is a deep misunderstanding that the only problem to be addressed is over-treatment at the end-of-life. A balanced approach would address something rarely acknowledged: that there is another problem, under-treatment at the end-of-life, and pressure against life saving treatment, resulting from health care disparities, discrimination, including discrimination against people with disabilities, and economic considerations.  
These issues come up in many ways:

• discriminatory “futile care” policies allowing healthcare providers to use quality of life judgments to overrule our decisions to receive treatment;
• discrimination in organ procurement and transplant practices; and          
• discriminatory rushing to judgment and denial of life sustaining treatment of newly injured persons based on hasty and unsupportable diagnoses of “persistent vegetative state” (PVS).  

Lastly, on another point, we and many disability organizations oppose the legalization of assisted suicide, which is just too dangerous.  It’s a prescription for elder abuse, and when legal,  it’s the cheapest treatment available, a frightening thing in our profit-driven healthcare system. Terminal diagnoses are too often wrong, the so-called “death with dignity” safeguards are hollow. Because the dangers so outweigh any benefit, the legalization of assisted suicide should be opposed.
Sincere thanks to Marilyn and DREDF for delivering this important message to the Committee.  Let’s hope the members and staff listen carefully. – Diane Coleman
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123975

Why Pro-Choice is Destroying Society

How legalizing euthanasia changed Belgium.

The following article was originally published on MercatorNet on May 17, 2013

By Tom Mortier & Steven Bieseman

In 2002, Belgium became the second country in the world after its neighbour, the Netherlands, to legalise euthanasia. Over the next decade our country has become a living laboratory for radical social change. With many other countries debating legalisation at the moment, now is a good moment to stand back and take a good long look at the results.

In 2002 Belgium was governed by a coalition of Liberals and Social Democrats. The slightly more conservative Christian Democrats had been excluded. With blue as the colour of the Liberals and red of the left-leaning Social Democrats, the press dubbed it the Purple coalition.

The Christian Democrats took a dim view of euthanasia, but they were in opposition. The Purple coalition was free to pass a euthanasia law based on the view that an individual should always have a “free choice” to end his life. In absolutizing individual self-determination the left and the right found common ground.

The law states that doctors can help patients to die when they freely express a wish to die because they are suffering intractable and unbearable pain. The patient needs to consult a second independent doctor; for non-terminal illnesses an independent psychiatrist must approve. In practice, however, this independence is irrelevant. Belgium is a small country and compliant doctors are easy to find.

A string of recent cases leaves no doubt that the euthanasia law has fundamentally and drastically changed Belgian society. Last year 45-year-old deaf identical twin brothers who couldn’t bear the thought of going blind were granted euthanasia. Doctors granted their request because they “had nothing to live for” anyway. According to the doctor who gave the lethal injection it was not “such a big deal”.

In another case, a 44-year-old woman with chronic anorexia nervosa was euthanased. Then a 64-year-old woman suffering from chronic depression was euthanased without informing her relatives. The doctors defended their decisions by explaining that these extreme and exceptional cases were legitimate because all legal conditions were met.

Euthanasia is hardening from a medical option into an ideology. Belgium’s euthanasia doctors even believe they are being humane because they are liberating people from their misery. Fundamentalist humanists go further and describe euthanasia as the ultimate act of self-determination. The opinion of the patient’s family has no weight whatsoever. A doctor is entitled to give the mother of a family a lethal injection without offering any explanation to her children. Euthanasia is being promoted as a “beautiful” and positive way to die. Doctors are transplanting organs from patients who die in the operation. (This is said to make their lives meaningful.) The law may soon allow children and patients with dementia to be euthanased.

Since 2002 opponents of the law (like us) have been marginalised as rigid and heartless conservatives who feel ill at ease in a post-modern, pluralistic and progressive society like Belgium. (1) The Christian Democrats have repudiated their traditional values and support the law. Questioning it has become taboo because the absolute right of the individual might be violated.

Herman De Dijn

There are still some significant critics, apart from the Catholic Church. The Belgian philosopher Herman De Dijn is an outspoken opponent. He describes Belgium as a “sentimentalist society” in which traditional values have been drastically minimized and replaced by subjective preferences. (2) A sentimentalist society no longer subscribes to ethical values other than those which are related to the search for individual happiness (autonomy and no-harm). Communal responsibilities and moral institutions are being discarded in the search for purely individual well-being; interdependence and connectedness are ignored.

De Dijn feels that this is the nub of the problem. A human being is not a bundle of individual feelings, opinions and preferences, but part of a species, a member of mankind, a vital link in the moral ecology where every individual has a unique symbolic value. Respect for human dignity includes not only respect for personal choices but also for connectedness to loved ones and society.

  

Supporters of the euthanasia regime repudiate this secular critique -- as well as the baneful influence of the Catholic Church. (3) However, their ideology of absolute self-determination has become so strong that it is morphing into a theology, a quasi-religious fanaticism. They have invented comforting symbols and rituals to express their beliefs. A self-determination card describes a patient’s final wishes so that the social services know what to do in a terminal illness. There are centres where people can ask questions about how euthanasia can be performed. There is indoctrination in self-determination for doctors and volunteers who wear their euthanasia enabler certificates as badges of honour.

Nonetheless, we are hopeful. Surely it must be possible to convince the Belgian public that something is terribly, terribly wrong when politicians are debating whether parents can legally have their children put down. It is not humane and it is not scientific. There is no scientific scale of unbearable suffering. With advances in pain relief, euthanasia is not even needed.

The key insight of the green movement is that all living beings are interconnected – even us humans. Especially us humans. The job of politicians is to protect this connectedness. Otherwise, why should parents care for their dependent children? Why should children care for dependent parents? Once we lose the sense that each of us is bound to one another with invisible cords of fellowship, we will end by killing all those who are burdens on society. And at some stage, all of us are going to be burdens.

Euthanasia does not threaten religious dogmas. Churches will stay open no matter what happens in hospitals and nursing homes. What is threatened is humanism. Instead of standing strong, arms linked together as brothers and sisters, the dogma of self-determination separates us, places us in bubbles of isolation, and then offers to kill us – if we want.

In today’s Belgium all of us are at risk.

Tom Mortier and Steven Bieseman teach in Leuven University College, in Belgium. They would like to thank Emeritus Professor Herman De Dijn for valuable discussions and Sylvia Statz for advice about translating the text.

Notes

(1) Burms A. and De Dijn H., De sacraliteit van leven en dood, Pelckmans Uitgeverij nv, Kalmthout, (2011), S. 71-89.

(2) De Dijn H., Taboes, monsters en loterijen, Uitgeverij Pelckmans, Kapellen (2003), S. 23-25.

(3) Burms A. and De Dijn H., De sacraliteit van leven en dood, Pelckmans Uitgeverij nv, Kalmthout, (2011), S. 91-99.

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Time

It doesn't seem to make a sifference; no matter how I try I never get catchup to the times I have to do.  I do not even have time to blog.  Everyday a new prioritory presents itself.

This past week Randy was being difficult and I did not know why.  Finally, yesterday he pointed to an application which I picked up from the bank when we were doing the banking.  After much pointing last week and yesterday I finally gave him a letter board and he slowly spelled out C+R+E.  I knew then he wanted me to fill out the credit card application.  I asked him why would he want a credit card.  No answer.  I then asked him if he wanted a credit card in case of an emergency.  He nodded his head YES. We mailed the credit card application and he was happy. He amazes me at times with his memory and determination. 

Since January 2013 Randy has been on strike against the RTs at GPC. He won't let them treat him.  Why, because he sees them as being the cause of him not having a passey-muir valve which would enable him to talk.  I was never told that he can't talk if it was attached to his trach, but rather that it was too dangerous...
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Terri Schindler Schiavo and Us

Need I say more about the dangers of advanced directives/DNRs ...see below letter dated May 10, 2013  This letter does not mention that from the time a patient knows of a DNR in Texas it is only a few day I think I read ten days to find another hospital to transfer to.  Good luck finding one on short notice. 

You might want to refer to the recent Kenny Ng 2013 BC Supreme Court decision which allowed his surrogate to starve Kenny to death and it was supported by evidence given that it was a medically appropriate decision. 

We live in a climate that many of us do not even have a family doctor who could (maybe) advocate for us. Just strangers who are under intense pressure to contain unproven cost savings and promote the mantra that quality of life is more important than life itself.  I was horrified when in January 2013 I was told by a young doctor that medicine was about quality of life. If newly educated doctors are taught this and they continue to believe it, we are lost.

Recently I spoke to a health professional who really did not understand advance directives but who told me that if he didn't honour a DNR that he could be sued.  What ignorance. What stupidity. You can't sue hospitals or hospital medical teams. As a further comment: do you think any court will $award anything for saving a life. Impossible.

All health is pro-life; otherwise, it is not healthcare. (Ron Panzer)


Dear Texas House Members,


My sister, Terri Schindler Schiavo, and the horrendous acts that took her life represent the tragic logic of the slippery slope of futile care policies, similar to the one enshrined in current Texas Advance Directives Law (Chapter 166.046 of the Health & Safety Code).

On March 31, 2005, Terri finally succumbed to dehydration and starvation because her estranged spouse and those entrusted to protect and care for her rejected her value as a disabled human.

Since Terri’s intentional death by dehydration, my family and I have established a foundation, the Terri Schiavo Life & Hope Network, through which we advocate for patients and families who fall victim to the same quality of life judgments to which our beloved Terri was subjected.

The hospitals and personnel and locations may be different than Terri’s, but the story is often the same: An unelected body of hospital or facility caregivers, strangers to the patient and deciding in secret, impose their own value judgments about a patient’s life and illness and then determine that continued wanted medical care should be withheld or denied. See the recent 2013 BC judgment of Kenny Ng wherein it was stated that it was a medically appropriate decision to starve Kenny to death.Search Vancouver Sun KENNY NG.

"Futilitarian ethics" seems to be growing in hospitals and care centers across America, and the powerful medical lobby has become more aggressive in codifying policies that jeopardize the lives of the disabled and dying.

Current Texas law is one such threat, and our foundation has been involved in helping a number of patients navigate through the futility review process and transfer to another facility. The alternative is a process of imposed death in which all power is in the hands of the treating facility.

Recently, I was made aware that proponents of a dangerous bill, Senate Bill 303, are using Terri’s photo to manipulate the truth about the bill and to confuse messaging about the dangers of SB 303.

I eagerly signed a joint letter opposing SB 303 that remains our firm opinion today. I have studied the legislation, and remain vehemently opposed to that bill. While recognizing that TADA needs reform, but I consider SB 303 to be worse than current law by expanding the power of hospital ethics committees over the lives and deaths of its patients by specifically authorizing imposition of DNR orders without consent of the patient or family, and requiring them to file a written appeal, this at a time of family crisis.

No one in my family authorized the usage of Terri’s photo or name in conjunction with SB 303. In fact, we urge you as legislators and protectors of the most vulnerable to oppose SB 303. In addition to further embedding the futilitarian mindset, SB 303 does nothing to restore any due process rights for patients. The hospital ethics committee is stacked with its own personnel and associates, yet they, with a clear conflict of interest, have the final say over a patient’s life and death with no outside checks and balances.

If you allow Senate Bill 303 to become law, the acts that led to the death of my sister will only increase in Texas. The decision to end my sister’s life unnaturally was based on quality of life judgments vs. clinical medical judgments. The calls to our foundation from Texas families feature the same conflict: value judgment on the patient has supplanted objective medical evaluations.

My sister lived for 13 days after the third court-ordered removal of her feeding tube. Texas SB 303 would sanction removal of artificial hydration and nutrition based on the following criteria—all of which were used to end Terri’s life. Under Section 7, Section 166.046(e), artificially administered food and water does not have to be given when the treatment—according to the hospital panel—would:

(1) hasten the patient's death;
(2) seriously exacerbate other major medical problems not outweighed by the benefit of the provision of the
treatment;
(3) result in substantial irremediable physical pain or discomfort not outweighed by the benefit of the provision
of the treatment; or
(4) be medically ineffective in prolonging the patient's life.

These criteria are broad and leave too much room for interpretation. “[N]ot outweighed by the benefit,” “substantial… pain or discomfort,” and “seriously exacerbate” are quality of life, subjective decisions imposed by the facility and physicians, not medical or clinical assessments.

Do not let what happened to Terri happen to patients in Texas. I urge you, State Legislators, to protect the most vulnerable, the disabled, and the dying from hastened death by rejecting SB 303 and the House version, HB 1444.

Respectfully,

Bobby Schindler
Executive Director
Terri’s Life & Hope Network

Mystery Solved

The mystery is solved.  A nurse telephoned me and said that that is what nurses on shift do.  She would do it whenever she had to write a letter ... before there were smart phones.  Now the puzzle of my banning is starting to make sense.  Staff doesn't want anyone around especially someone like me who visited Randy every day. 

So that is what Whilley has on the staff at GPC: I won't say what staff is really doing as long as no one objects to me sleeping at GPC on my own comfortable lounger (drapped in sheepskin). He was doing this for six years. I think this is a blatant example of corruption in full sight.

The banning of myself from GPC has had a devastating effect on me.  It was orchestrated by the staff on Ward 2 and Whilley.  I still remember Whilley telling me that a petition was being signed to get me banned from GPC.  I was terrified. I will never forget the injustice of it all.  Whilley is still there as well as the staff when I got banned.  No one spoke to defend me.  Even now no one speaks for  me.

Now I have become a monster:.  a true advocate for the disabled, the elderly, the ailing and for those that have been blind sighted to agree to any form of advanced directive. A proponent for the sanctity of  life. ..

Helpless

I went to see Randy during a group keep fit activity today at GPC.  Comparing his level of participation with other residents of the group, I felt so helpless realizing just how handicapped Randy really is.  He tried so hard to participate but could barely do so. It was painful to watch him.

I still haven't heard from the Ethics Committee as to why we were subjected to repeated DNR requests. 

What are they doing behind the curtains

When I return Randy back to GPC, I leave him in the hands of the nurses as they ready him to bed.  After watching vimeo.com/64462798 an interview with the daughter of a man who died of bedsores at Burnaby General, a thought raced back to me.  What are they hiding?  On Saturday I returned Randy and since he did not want to return to GPC I promised that I would wait until after he was put to bed and then stay with him until the visiting hours were over.  When returned I was told by his nurse to leave his bedside and I had to wait one hour before he was safe in his bed. Why should this have taken one hour; when it should have only taken 10 minutes; 15 minutes top.  What are they doing.  Hiding something I should see or alternatively texting on their smart phones  I have seen this man naked before, so why am I ushered out of  his "home" by the nurses...Randy can't even talk to tell me what is going on....of the ten residents on Randy's "open" Ward, only one can talk ...



.

When did it Change

In the 1960, the 1970s and the 1980s society (medical industry) was doing everything to extend life and they did.  The sanctity of life was in tack. And it was not until the early 1990s that it was decided that the unproven financial  cost to allow everyone to live longer was too high.   In the 1990s it started to change to "quality of life" and the willingness of patients to end their lives sooner than they needed to.by being convinced/coerced that it was in a patients best interest and he alone made this decision. The method they used to triage patients was advance directives/levels of care... Who needs patients who are a burden on society and their families and difficult to treat and will never be productive members of society.  They are not only going after the elderly but others as well like those who were injured through extreme sports or have a long-term disease.They are targetting each one of us.  It is easy to postpone treatment for heart attack, stroke, pneumonia or cancer until a patient/resident has a sudden death. This is called a slow DNR.

I remember reading recently of an economist from back East saying that our medical system is sustainable and it is not necessary not to treat the elderly.......  The elderly are paying taxes on their pensions/income/assets/purchases and are a source of revenue for the economy.  When I went back to cite this article I could not find it but it made sense to me at that time.  So maybe all this about cost savings is not cost saving but rather to dispose of those of us who are not perfect and not in good health. And you might ask where do your assets go upon your death... 

All forms of advanced directives have to be banned. This to ensure that everyone has security of person i.e. life..

How to Solve the Health Care Problem

Decades ago I was told that to make money in the long-term you have to spend money.  And this is what the Province should be doing respecting health care.  No harm will result.   More jobs will be created thus more revenue will recirculate into the economy. And among the compounding effects will be that we will all have security of person. We will not have to worry about whether or not we are receiving optimal care because of budget restraints. Start medical training in Grade 10 so that upon graduation everyone is a LPN and those credits can be applied to a RN degree.  Look upon health care as a natural renewable resource and it will attract investment from around the world in the spinoff industries.

I did a terrible thing yesterday.  A man I assume was from India offered to share his over sized umbrella with me and Randy and I told him that it wasn't necessary.  I said that rain was good for the earth and also us humans.  I should have allowed the comfort of his umbrella and chat with him as we walked the two blocks in the pouring rain to the entrance of George Pearson Centre.  If I see him again, this tall elderly man from India, I will run after him and apologize. An offer of kindness has to be appreciated. (Randy was covered in a rain cape especially designed for wheelchairs)

I still haven't heard anything from the VCH's Ethics Committee on why Randy was bombarded with DNRs these past six months.  This discussion happened many times and each time we voted for full code and VCH seemed intent on voting for a DNR.  Caution:  if you do not have 110% confidence in the medical/legal system never agree to a DNR.  Do not believe the quality of life issues VCH will argue. Life is worth it no matter what. Too many mistakes can be made with DNRs, Advance Directives, Living Wills, etc. Research it on the web. Ask yourself why the push for DNRs...start with www.texasrighttolife.com...end of life care.


123,260

Nothing Changes

I went for a short walk to GPC at 11:00 am.  I wanted to know Randy's status as he wasn't looking well.  He was lethargic, unhappy and needed a suction. Since no one was available after about twenty minutes I used the call bell.  Ten minutes later a staff member arrived and said to me that he doesn't have to talk to me as I am not a patient...
1.  Because of Randy's injury, he cannot talk;
2.  Randy isn't looking well as he has an infection and needs someone to be his voice and expects me to look after him..


123,050

Aftermath of Hospital Report Card 2013

Referring to the B.C.Minister of Health's comment that 90% of the people are happy with the excellent care provided by VCH on CKNW on Thursday (Bill Good's show), .what about the other 100,000 people, (the ten percent) who do not share her view.  We are talking 100,000 people in the Vancouver area alone..

122.986

VGH's Report Card (CBC's Fifth Estate)

VGH has been assigned a D; I suspect GPC must be a F.

This indicator measures the number of patients per 1,000 who develop problems tied to nursing care such as urinary tract infections, bed sores, pneumonia or broken bones. Nurses are not solely responsible but studies show a strong link to low nurse staffing levels. see cbc.ca/health

At GPC I have never heard or even seen any nursing staff being "burned out" from being overworked.  And no patient/resident at GPC will ever attest to that.

So Randy has been getting poor nursing care as I have suspected:of his urinary tract infections, bed sores, pneumonia, broken bones, psychological neglect....

see cbc.ca/health


122,888

An advocate

This past week a medical professional complimented me on being such a good advocate for Randy.  I have heard that before.  My response to her was why does Randy need an advocate.  If the medical establishment was doing its job advocacy would not be necessary.  The medical profession has convinced the government that it is policing itself so the government does nothing. I still haven't got a reply from the Ethics Committee as to if it will look into the events surrounding Randy's DNRs.  When did quality of life rather than life itself become the medically accepted norm ...

Carter Appeal

Listening to the Carter Appeal last week the bell rang what about reverse discrimination.  Why is it that two or three people who are so handicapped that they can't commit suicide by themselves should be granted a "good and safe" death under the supervision of the medical system while the rest of us who are suffering have to opt for a painful death by dehydration (refusal of food and water i.e.refusing medical treatment) or a violent end with a gun.
 
122,163

.
 

Nothing has Changed

The other day at the Oakridge bus stop I mentioned to one of the RN in Randy's Ward who was waiting for the bus that Randy is going to be angry at me as I am very late.  She didn't say anything but I noticed her inching away from me to being fifteen feet away.  It didn't connect.  At 57th after exiting from the bus with this RN who was walking more than a few feet behind me on the public sidewalk to the entrance of GPC and at the 7th tree I tumbled from the sidewalk head first and fell. : the sidewalk was sixty years old, it was uneven and I was wearing sloppy shoes.  As I laid on the grass next to the sidewalk not knowing if I was injured or not the RN from the Oakridge bus stop walked pass me without even inquiring if I was okay.  I could not believe it. A RN, a nurse, someone who I see whenever she is on shift, Randy's sometimes charge nurse, and she just walked by.  If she can't greet or help an old lady in distress I wonder what she is doing to the residents at GPC.  I know there are some good people at GPC but I would like to know who they are. During the 2.5 years I have been going to GPC no one has shown me any real  kindness...I wonder how many patients/residents at GPC are likewise treated by this nurse in the same manner. But then no one would see her behavior since patients are in private rooms or hidden behind mostly closed curtains in open wards which wards are designed so that staff can see all the patients from a glance but when the curtains are closed then no one can see no evil, heard no evil, speak no evil..  Relying on S02 meters should not the accepted method to use when a patient needs suctioning.  The SO2 is a default and subject to equipment failure and in Randy's case he rarely has his SO2 meter on during the day or his humidifier on during the day putting him at risk.. Using the humidifier keeps his secretions thin so they do not plug up preventing him from breathing. .Randy can't talk so he can't even call for help as his call bell is hung up behind his headboard out oh his reach, so he could not even reach it if he had to. All hospital wards should be videoed and audioed so every movement and conversation can be heard.  In Jails every thing is videoed so why not hospitals. When you go to a retail store you are under surveillance.There are cameras on transit vehicles.  Residents are not asked if they want to be under surveillance or not (patients do not even have this protection) it is up to the hospital.  You would think that Risk Management would be insisting on such measures to protect the integrity of health care.

121,884

.



 

Flashback and post traumatic stress

I am in a very bad state of mind.  I have having reoccurring flashbacks of my life these past few years.  I wish these memories on no one.

Yesterday I was reading the Particulars from one of my neighbours from hell.  The Particulars are in the complaint she filed with Animal Control over Randy's doggies.  Her hate of me is a direct result of my  banning from George Pearson Centre. I must be a crazy otherwise I would not have been banned so she has license to do what she wants to harass me and make my life untenable as she is being a good neighbour looking after the neighbourhood and calling the police (and the police came) because she suspected that I was casing homes in the area so I could rob them. I was walking the doggies. To resolve the doggie issue with her (their barking etc.) I asked her for the use of her overgrown six foot high fenced backyard for the doggies to play in as I had no fenced yard. To her any sharing of her never used unkept fenced-in property was a preposterous suggestion.  This from a mature woman who lives with her 80+ year old mother in a $3 million teardown bungalow off of Cambie at Oakridge. 

But then it now seems that my banning is now under the heading guidelines. I am not sure what guidelines mean to VCH because it apparently gave authority to Paladin security and medical staff to physically assault me and deny me access to Randy on his death bed when he had pneumonia in October 2012 with a DNR over his head. I was forcibly removed from Ward 2 with the brutal assistance of the VPD. Every other time I had occasion to deal with the police they were always kind to me.  I did not want to leave Randy as he was very sick (with a DNR unknown to me on his chart)..It might have been the last time I could have been with him. A DNR means that a patient does not go to intensive care. With a serious pneumonia this is where you should go especially if you are rushed from another hospital. In this case from GPC, to UBC, to VGH..

And the only consolence I have are the words of my MLA, Moira Stilwell, that I should not take the actions of GPC personally as VCH is just being overly cautious. I have nothing against banning for two days as emotions can run high but not for two years and beyond.  This from a MLA whose constituent office is never open for constituents.  In the two years that I have lived here, I went to her office many times and her office was always closed.  If you phone there is a message that says if the office is closed the staff is in the community working.  Doing what, to whom, where. Moira has so much perceived power that she doesn't have to interact with the public unless it is managed and staged but then she has a medical degree so she knows she can do whatever she wants and get away with it. No accountability, just photo opts. A mole for Vancouver Coastal Health.

On Wednesday ten days ago I went to the garbage, lifted the lid, and found the three "teak boards" I use as a portable ramp for Randy to access my basement suite. I live in the basement of a duplex.  One of my neighbours from hell was reinforcing the fact that the tenants here do not want a handicapped person on the premises as it made them feel uncomfortable. Another stress on my life ...I now have to guard these boards with my life so Randy can visit me. I assume it was this neighbour who deliberately cemented cement blocks on the sidewalk in front of her duplex so I could not push Randy in his wheelchair pass her door. This was the same neighbour who complained that I would damage the common area grass should I exit to the grassy area as I pushed Randy to the small garden patio area I have in front of my windows. The common grass is fifty years old, diseased, and should be replaced.


When I went to see Randy at 2:00 pm he wasn't looking well and I did not know why.  He said that he wanted to go back to bed which is uncharacter for him as he always wants to go off site.  I was concerned as he seemed to have breathing problems as his trach needed suctioning. His eyes were in a fixed staring state with tears, his colour was off, and he looked lethargic. The RN said he was fine after she took his temperature.  But still he looked not well.  I started to panic.  It wasn't like him.  I let him to muse for a few minutes then I asked him did he want to stay in GPC in bed because on Sunday I was crying and he couldn't help me.. He said yes.  I told him that I have a right now and then like Randy has the right to be depressed and cry.   He concluded that was okay and a few minutes later he asked for the letterboard and he wrote Let's go home. It was 2:30.

121,581
.

Kenny is Dead

I was told that Kenny Ng has died at Vancouver General Hospital.

How often do substitute decision makers make the decision to withdraw treatment. Kenny would have died in his own time.  What a waste of the court's time, the lawyers' times, and the hugh division that has happened between the families.  Not to mention the financial $cost to do this. And the nauseating taste/fear of the system to me. In Canada we have no inherent right to life, liberty and security of person. 

How many deaths are caused by removing life support? By substitute decision makers? By patients themselves? There is no way of knowing. 

121,276

Kenny Transferred February 28 2013

I was advised by three sources that Kenny was transferred on February 28 2013.  I am not sure what "transferred" means at GPC as its policy is not to tell as it is confidential information and can only be given out with the approval of the patient and in this case, Lora, as Lora is Kenny's committee and she can do whatever she wants with Kenny be he dead or alive. She doesn't even have to tell his parents.  

I do not understand why there hasn't been any public interest over what is happening.  But then if the public doesn't know or even those that live and work at GPC do not know, how can an outcry happen.

A medically appropriate decision implanted in Lora's mind by whom?

View HUNGRY (power of a substitute decision maker)

  Please search and view video:  vimeo.com/35540157
  (from the viewpoint of the patient)

Madam Justice Gropper

I do not know why Madam Justice Gropper refused to use her inherent jurisdiction in the Ng vs. Ng case and say that a committee cannot end life.  She must have had her law clerk opinion the judgement..  And to make it worse BC's Public Guardian and Trustee agreed. I side with Kenny's parents and his siblings who opposed the injunction. 

From reading the January 2013 Judgment it says to me that the medical establishment can trump a Committee (a family member/substitute decision maker) by saying it is a medically appropriate decision to put a human down....starve Kenny to death.  So it has come down to if a patient is minimally conscious and a doctor suggests (tells)/coerces a Committee that it is medically appropriate for her to end a life that she has no choice but to agree. To disagree would not be in the best interest of the patient and that is what it is all about... the best interest of that person.  The doctor trumps the committee if the committee disagrees and the Gropper decision legalizes it.  The Committee will lose its committeship as to keep that person alive would not be in the best interest of that person. Enter the Public Guardian and Trustee. The gatekeepers for life and for death are in charge and are forever present..

The medical complications that Kenny has/had could be poor nursing. The care team who sealed Kenny's death:were a family doctor, a neuropsychiatrist (report dated December 2009), a social worker, nurses (what nurses, a Nurse Ratchet), a pharmacist, a recreational therapist and a speech therapist. Why wasn't the dietitian, the respiratory technician, the music therapist, a religious minister or the non-profit clown doctors included. The ethics committee supported the "team's" decision.  What a joke. I have been asking the VCH 's ethics committee to investigate who orchestrated Randy's DNT/DNR  It has been four weeks now with follow-up requests and nothing. In November 2012 Randy was forced to agree to a  Do Not Transfer from GPC so that he would  not be transferred to VGH in the event he had life threatening medical problems.  If Randy needed to be treated at VGH he could not go off the grounds of GPC i.e. to visit me which he does every day. So he chose certain death (the DNT) to be with me. A Do Not Transfer has worse consequences than a DNR. After three months. a few days before Christmas, I was told that the DNT/DNR was lifted but I wasn't given a copy of the last Level of Intervention document although I asked for it.

GPC,  however, should not dislodge Kenny's feed and liquids tubing according to a recent Ontario Supreme Court decision  (the Rasouli case) as it can be interpreted that such tubing is designed to keep a patient alive thus the tubing should not be removed.

According to the Canadian Constitution we have "security of person."  That means LIFE and not premeditated death (suicide) by a Committee with or without consent.. We do not have capital punishment in Canada but a committee can kill someone as long as it is in that person's questionable best interest sanctioned/directed by a doctor. How can death be in the best interest of a patient. The powers of a Committee (substitute decision maker) should fall short of authorizing certain death. And doctors should be technicians not arbitrators of "quality of life." Everyone will die in good time.  There is no reason to rush it.

How can food and water remotely be deemed as "artificial life support." Is feeding a baby with a bottle and formula artificial life support?  A baby cannot feed himself.

As it is now possible to secure stem cells from urine, then there is hope.

If anyone wants a copy of the Ng v Ng judgment, let me know.

Go to: http://vancouversun.com and search for articles "Kenny Ng."

Go to: http://voiceofgonebalilstic.blogspot.com
audreyjlaferriere@gmail.com
604-321-2276

PS Feb 24/13 :  Please search and view video:  vimeo.com/35540157
PS Mar 8 2013 On February 28 2013. Kenny was transferred from GPC ... and the current resident said that she was told a month ago that she would have his room. 






.

Ng v. Ng

A week Friday a BC Supreme Court Judgment went down so that Kenny Ng's wife can authorize Kenny being starved to death at George Pearson Centre.  It should take two weeks. After reading the Reasons for Judgment I became very upset.  Kenny is in a minimally conscious state which means he is not brain dead. Since according to Dr. Narmazi and Dr. Tham, Kenny won't get any better due to his injuries and medical complications so it is medically appropriate that he should die. How can killing Kenny be in his best interest.  Everyone at George Pearson Centre will never get better so will this start a slippery slope to extend to each of them in time.  Kenny will die soon enough on his own so what is the rush.  If you want a copy of the Reasons for Judgment let me know.
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15 out of 15

This takes the cake.  I asked a woman at the bus stop if she knew what a medical DNRs was.  She said No.  But she kept repeating DNR and said she was a nurse 30 years ago and the term was not something she remembered.  She told me that she worked as a nurse in Toronto ORs and when she married well and moved to BC she didn't have to work any more.  It must be the best open well kept secret in BC.  Only those that need to know know. When did DNRs become common practice. The medical establishment knows how to spin death: DNRs/Advanced Directives as medical treatments not doctor assisted suicides.  When medical staff stands by watching someone die because they have a DNR then they are commiting a crime far worse than murder: genocide.Everyone of us are going to die, the medical establishment does not  have to rush it.

                                             Randy Michael Walker VGH August 2010

14 out of 14

My survey now includes 14 out of 14 bus users that did not know what a medical DNR is.  And those that have agreed to DNRs or Advanced Directives I am sure when questioned would not know what they were really agreeing to: a patriotic duty to end one's life sooner than necessary. After agreeing to a DNR are you sure you are going to get optimal care.  There is evidence/research to suggest otherwise. The question is does anyone trust the hospital system.  Even doctors don't trust their colleagues so where does that leave us. 

And another thing I have been wanting to do was to confess to my ignorance of the hospital system.  I blamed Tanu the Nurse Ratchet of GPC when she told me the first time she spoke to me that I could not talk to anyone unless that person talked to me first.  The protocol on how to approach the monarchy. But her telling me does not excuse her from not showing me a written policy.  When Randy was at St. Paul's in December I noticed that there were notices posted stating that visitors are not allowed to talk to others.  I wonder how long this policy would exist if it was posted on a huge bill board outside the entrance of St. Paul's -- next to the bill board asking for public $donations. 

I am still at odds as to why Dr. Patricia Daly hasn't decreed that masks should be put at the entrance of the hospitals especially during flu season.  It isn't staff you have to worry about spreading the flu, it is visitors, vendors and the like who might not even know they have the flu.  Even if you a flu shot, it is only 60% effective. 

The problem with VCH is that no one is in charge but then that is what democracy is all about: chaos and stupidity.

120,707
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Get DNRs: Save $.

Higher 30-Day Mortality for Surgery Patients With DNR

By Joyce Frieden, News Editor, MedPage Today

Published: April 20, 2011

Reviewed by Dori F. Zaleznik, MD; Associate Clinical Professor of Medicine, Harvard Medical School, Boston and Dorothy Caputo, MA, RN, BC-ADM, CDE, Nurse Planner

Action Points

• Explain that a study found a higher rate of surgical complications and death among patients with a "do not resuscitate" order within 30 days of the procedure compared with matched controls who were not DNR.
• Note that even surgery classified as nonemergent resulted in more deaths within 30 postoperative days among those with a DNR order; reasons for surgery were not captured in the database used.

Patients with "do not resuscitate" (DNR) orders are more likely to die within 30 days of surgery, independent of other factors, a new study has found.
Compared with non-DNR patients, more than twice as many DNR patients died within 30 days of surgery (8.4% versus 23.1%, P<0 .001=".001" and="and" at="at" colleagues="colleagues" em="em" in="in" md="md" online="online" reported="reported" roman="roman" sanziana="sanziana" university="university" yale="yale">Archives of Surgery
. As well, the DNR patients were more likely to die no matter what surgical procedure was performed (35.5% versus 17.8%, and 16.6% versus 5.5% for emergent and nonemergent procedures, respectively, P<0 .001=".001" all="all" for="for" p="p">.
 

Geoff Plant 9

I have been feeling totally demoralized over the incidents so far.  I cannot rest comfortably as I know now how fast Randy can end up in hospital.  I remember the YouTube video which explains how VCH deals with the public: delay; deny, divide, discredit and demoralize.  Each day this is still happening.  I am afraid even to speak to anyone any more. Not that I am afraid afraid but because it seems a waste of time.  Even the organizations which are out there after an initial consult abandon me. All the E/Ds know each other and purple dot those that need help much like how VCH purple dot troublemakers which VCH creates in the first place.  I am always told that I am not alone and what happened to me happens to others and then silence. 

Piecing together what happened with the DNR fiasco it is beyond comprehension. I lived with Randy for six years prior to his accident and  for 900 days since his accident I visited him in hospital and I was told I unduly influenced Randy to rescind the Do Not Rescue Order he alledgedly placed on himself so it was not removed.  Although on Friday before Christmas 2012 I was told that his coding was changed to FULL CODE I have yet to see any written proof of it.  It doesn't really matter in any event as a physician can change it the next day and there is no legal obligation for him to tell me or even tell Randy as it might upset us. So much for paternalism, truth and transparency in our health care system.

Geof Plant 8

My survey (location bus stop) is now up to 13 out of 13 who do not know what a medical DNR is. 

Geoff Plant 7

My at the bus stop survey has generated 12 out of 12 Nos to the question of whether that person was aware of a medical DNR Order.

I looked at the four levels of DNR intervention protocols and not even a lawyer could write how confusing they are.

I spoke to a young doctor yesterday and she said that health care is all about quality of life issues...sounds like Hilter and his solution to less than perfect people..

Randy is recovering nicely.  He is back to his demanding stubborn self again.
.

Geoff Plant 6

Yesterday was a very difficult day for me.  Randy was so so depressed.  He wanted to talk but couldn't.  He wanted the pm valve on his trach.  The valve that enables him to talk/whisper.  The valve that he had on at St. Paul's.  Since his return to GPC  he hasn't had it.  He then didn't want to return to GPC and each day I am forced to return him and he gets extremely angry with me.  I can hardly blame him.  There doesn't seem to be a solution.  I am so scared at times that he may commit suicide by refusing treatment.  VGH fully knows this and hides behind the tenet that a patient can refuse treatment.  They encourage suicide by doing nothing.

Geoff Plant 5

For the past few days it has been very difficult for Randy as he didn't want to return to GPC.  At St. Paul's he was being treated beyond his infection. I do not understand where these infections are suddently coming from.  I suspect VCH doesn't even want to know where they come from.  Investigating causation would hurt the $bottom line.

At St.Paul's he was given a pm valve so he could talk (whisper), he was given breathing exercises,I was giving him mild bed physio, he was given motivation and hope.  These past few days he have been terribly depressed and he won't do anything. 

As for me I am totally exhausted.  With three admissions to VGH, and two to St. Paul's for treatable life threatening infections and DNRs to cancel, it will take me a bit to recover. 

This Christmas season has no reason for me to remember anything.  It is as if it never happened. 

Geoff Plant 4

Randy looked so healthy today.  St. Paul's did wonders for him. Finally, I think staff has come to the realization that I am also part of Vancouver Coastal Health.  I cannot understand how they can divide people like they do.  They can't deal just with Randy; they also have to deal with me.  What happens to Randy also affects me and I am part of VCH.
.
.

Geoff Plant 3

As expected without notice St. Paul's transferred Randy without his consent or mine at 3:00 pm Monday December 24 2012. back to GPC.  Now he faces Christmas in an institution he doesn't want to be in.  St. Paul's didn't even tell him of the decision.

I received no assurances that anything will be done to ensure Randy will be more safe at his "home."
No one even told me if he fully recovered from his pneumonia. 

Vancouver Coastal Health has no fear.  Maybe a plea to the public not to donate money to St. Paul's or VGH might be more effective.  

120.503

Geoff Plant 2

I was hoping by now that I would receive written confirmation that Randy was FULL CODE at GPC.  Even if I did it does not discount that Randy is not safe at GPC (when he is returned without him wanting to and I being forced to convince him) would still be outstanding.

I suspect the reason Geoff Plant can't help us is because to do so would be an admission by Vancouver Coastal Health that Randy is not getting the standard of care he is entitled to.

120.414

Geoff Plant...604-891-1186

I received an email from Geoff Plant yesterday saying that he could not help us.  Geoff Plant is the Chair of Providence Health (St. Paul's Hospital).  If he can't help us, who can.

When I was talking to Chris Shaw, Patient Relations, from St. Paul's yesterday, Bob Chapman's counterpart, he sounded just like Bob Chapman, so no help there. He said that Randy would be returned to GPC although Randy does not want to go there because it is unsafe

Later today I spoke to the social worker at St. Paul's.  She said that Randy was going to be returned to GPC without him even going upstairs to recover. When I argued that it was not safe for Randy to return to GPC her comment was that she had no evidence.  It is not her to make the determine if GPC is safe for Randy or not.  It is up to her to make sure a full investigation is done and concluded before Randy is transferred anywhere. Her job is to make sure Randy is safe.  Randy became pissed off with me as she did not include him in the discussion. And I couldn't tell him him that St. Paul's was going to send him back. It was just too hard not knowing how he would react. I will have to leave that until Thursday.

Randy of course does not want to go there.  He wants to stay at St. Pauls.

Last time Randy was moved from VGH to GPC he was terrified when he realized where he was going, he pulled out his trach when he reached GPC..  He also has a history of self-harming himself.  But his psychological state means nothing.

I still cannot fanthom how they could even consider a DNR order when he is clinically depressed. As soon as Randy is returned to GPC, the DNR order will be reinstated and this time the staff will make sure that I am not privy to any health complications. Randy cannot change his mind only Dr. Done can make that determination. Randy doesn't even have to sign anything; only Done's word is regal. Representation agreements are a joke.  If staff think a family member might influence a loved one, the family member is excluded from everything. There is already a dictate by Ro Ang saying No Conversation with You, Audrey. How can I make sure Randy is being cared for it I can't talk to anyone and my visiting hours are restricted to the point that I might as well not be there. On Thursday last (a week ago tomorrow) Randy's lawyer was to get the DNR removed and I haven't heard a word from him although he promised to tell me of his success last Friday.  You can't trust the medical system, you can't trust your lawyer, who can you trust.

It is not Randy's fault that his injuries are such that GPC cannot treat him properly and it is too expensive to keep him in an acute care hospital. 

No other institution would force anyone to return to an abusive dangerous situation expect for Vancouver Coastal Health and also now St Paul's: a hospital that values life and family and religion..

The definition of abuse is any action or inaction by any person that causes harm or risk of harm to a person.  I suspect VCH gets around the definition by saying that VCH is not a person.Abuse includes physical, emotional, or mental harm and neglect.

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Randy has Septisemia

The all powerful Dr. James Dunn.  No one is going to tell him what to do.

Randy was admitted to St. Pauls at approximately 3:00 pm Friday December 14 2012 with septic shock.  As I walked up the driveway to see Randy an ambulance and an ambulance supervisor's vehicle was also entering GPC.  I wondered who the ambulance was for: who was dead?  I phoned security because I am not allowed on the ward 2 unless I am escorted and when I entered the ward it was Randy who had the paramedics who were trying to make sure he was alive.  And the only thing I could think of was was the DNR removed.  Randy's body was violently shutting down.  I am not sure what the medics did but they somewhat stabilized Randy as they transferred him from his bed to a stretcher.  Randy was scared as he reached out to me to save him.  It was honorific that his life had come to this.  This meaning the neglect and substandard of care Randy has received.

Emergency at St. Pauls attached him to an IV as he was terribly dehydrated and administered antibiotics.  The best I could tell is that staff at GPC was negligent is that he had not peed for a long time and the pee backed up into his bladder and got infected.  There is a pee bag and one of the things staff is suppose to do is make sure he passes urine.  His heart rate was elevated and it could have stopped at any time. And if I wasn't there to argue full code he could have passed. Once you are labelled DNR your standard of care rapidly diminishes and do not think otherwise: you are sidelined. There is a movement in the state of New York of doctors who will not be a party to a DNR.   I am now in the same dilemma as I was last week.  Randy is full code at St. Pauls but as soon as he is returned to the all powerful environment of Dr. James Dunn he will be DNR. Each time Randy has been hospitalized it could be 95% attributed to substandard care.

On Thursday December 13 2012 after seeing a lawyer I sent this email to all those concerned to make sure Randy was FULL CODE.

Randy and I attended a lawyer this afternoon and he after a long discussion with Randy asking questions only lawyers know how to ask determined that Randy wants FULL CODE.  He said he will try to get in touch wtih Dr. Dunn tomorrow.  

In any event this is notice that Randy is to be FULL CODE as of now.

I will never forgive any of you for ambushing Randy who alledgedly agreed to this sentence of death.  I want to know where did the idea of the DNR originate when Randy is not terminally ill or in pain.  And this two days after Randy's annual meeting where it was stated that Randy was full code.  And above all why wasn't I included in the initial conversation considering Randy has said that I was to be included in all discussions respecting his treatment and housing.  If I do not get a decent answer from you I am going to assume it is a directive from Napolean Ostrow and his Josephine to cut costs.  I see no other reason for it.

In addition to my email the lawyer also sent an email on Thursday to Ro Ang, the manager, of GPC notifying her of his determination and for Randy to be given full medical care.. I sent my email to make sure everyone was aware.

On December 14, 2012 at 3:47 an email was sent by the social working who advised that Randy is still DNR as Dr. Dunn did not change it.  The social worker should have immediately changed the CODE as such  intervention was time sensitive.  He knew and all the others he emailed to by that time that Randy was on his way to St. Pauls and he never did anything.  This is totally criminal what he and the others  he comspired with did nothing.  If I didn't have the whereitall to check his Codings with the ambulance attendant and upon arrival at Emergency no one would have asked Randy if he still wanted DNR , Randy could have died.  Emergency told me if I did not bring it to its attention he would have been treated as a DNR. If I hadn't arrived when the ambulance was there I would have never known what happened. Dunn shold have put the coding on abeyance until as I requested Randy had legal advice, another medical opinion, and the comfort of a priest.  Dr. Dunn and everyone at GPC refused Randy these avenues because legally they do not have to ensure Randy's consults with anyone. I do not count as Randy can't change his mind everytime he talks to me as I influence him as if VCH doesn't..  Their arrogance overruled his lawyer who had no influence to change the coding because legally he is barred.  You must understand that Randy immediately changed his mind on November 28 2012 after I explained to him that he wasn't terminally ill and this designation could be a slippery slope to an early unnecessary death.  This was on November 26 2012. It is now December 18 2012.

I just phoned Adela at GPC (604-322-8370) December 17 2012,.  Nothing changes at GPC. Mostly they won't even answer or take a message.  In this case Adela said it was 7:00 am and shift change and for me to phone back and she didn't even ask me what I wanted. I said no take a message.  I am sure she never did. They never returned my voice messages. This is the type of attitude I always seem to receive when I try to phone GPC.  The only thing I wanted was for her or someone in Ward 2 to put Randy's shaving gear with his wheelchair so it will be transported to St. Paul's Hospital where he is now.  All evening yesterday I was trying to call and the phone was always busy. On December 18 2012 the nursing staff at St. Paul's tried all late afternoon and evening to get in touch with Ward 2 and again the phone was busy and voice mail was disengaged.





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The DNR is still there

I have been trying the best I can to get the DNR removed but Dr. Dunn, the government appointment physician, has not removed it.

From the very beginning I begged that the DNR be put on hold until Randy had legal advice, an independent medical opinion, and a priest.  All were ignored by Dr. Dunn.  And the social worker who is an officer of the court and is suppose to be looking after Randy's best interests runs from all responsibility.  DNRs are lethal instruments.  And the Public Guardian and Trustee told me that Randy does not have to tell me of his decision as it is between doctor and patient. Families don't count. The problem with this logic is that Randy cannot communicate.  He cannot talk or write. He can nod yes or no but because of his brain injury I find that at times he will say yes when he means no. 

I was so distaught about the DNR at GPC that I bundled up Randy and took him to St. Pauls for four days (he had a fever) who put him on FULL CODE and  Randy wasn't to be returned to GPC unless he remained FULL CODE.  Dr. Dunn renaged on this and Randy is still DNR.

Randy signed letters to GPC saying he wanted the DNR reversed but GPC has refused to honour his written requests.

It is like the Rousouli case which is in front of the Ontario supreme court where the doctors believe they have the right to withdraw life support against the wishes of his family..

Is it going to be too late for Randy like it has been for thousands of others who have had DNRs on them not suspecting that it would be near impossible to have them removed or worse didn't even know there was one. A DNR only has to be sign by one physician.  The patient does not even sign it.  And no witnesses are required. 

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DNR Orders

I still do not understand the rush for getting a DNR from Randy.  He is already on heavy life support so why would he now want a DNR.  Randy does not want a DNR but VCH is intend on getting one like they are under a  quota before the end of the year. I believed that Randy could change his mind but GPC said no he can't,   So once Randy agreed to a DNR he can't change his mind. Don't sound right but VCH seems to do a lot of things that do not sound right.


The decision to place a DNR order on a person’s medical chart belongs to the physician. This decision may be made without anyone’s knowledge or consent. People with developmental disabilities are extremely vulnerable to DNR orders if they have no one in their lives to advocate for them. Consequently, people with developmental disabilities are sometimes not given life saving interventions when they might otherwise be given the intervention if the disability were not present.
(contact BCACL 604.777.9100)

Things are a bit better....

Things are getting a bit better for me with Randy now that I am allowed to enter Ward 2 and stay with Randy for one-half hour sometimes it is extended to one hour.  If he doesn't feel up to getting up I make sure he is comfortable, we chat a bit, and I make sure his television is on.

I do not have to take my valium any more as I access George Pearson Centre in anticipation of the stress of waiting and waiting and waiting for staff to bring Randy to the visitor's room. I was so intiminated that I could not speak to anyone for the fear that I would then be subject to a report that I was combative and agressive.
Now still under security of course I can go down to his open ward bed and if he wants to go to my place or to Oakridge for a few hours, I help him get dressed and we are off.  I recently purchased him a $80,.00 rain cape that engulfs him while he is in his wheel chair outside.  He also wears a Steelers hat.  I purchased him a Steelers jacket for his birthday on December 10 2012 which I know will make him happy. He is a devote Steelers fan.

The same is when I return.  I call 4777 Paladin Security on my arrival.  They immediatley escort me down to his bed and watch me and I spend a few minutes sometimes a 1/2 hour to make sure Randy is comfortable. There is no problem; no residents are shrieking that they are afraid of me. I am not even noticed by the other residents.

Randy of course is more relaxed as he knows that I am looking after him at his bedside.  Finally I am somewhat comfortable with this arrangement but of course I would prefer 24/7 access to him like other family members have to their loved ones.

I am hoping to access the ethics committee for a ruling to say a two year ban based on staff and visitors who have nothing else to do but target a 70 year old lady and bully her until she had a verbal outburst with staff over giving a stuff toy to a resident is unreasonable.  The LPN grabbed it out of my hand and he told me the resident did not need it.  And after two years the LPN is till working there making decisions for residents.  The Santa Clause stuffed toy remained for months in the nurses station.

119345

DNRs

Recently on one of the newsmagazines on tv there was a segment about a DNR Order for a older gentleman to which his daughter, a nurse, wasn't aware.  She was with her father when he was in distress and was prevented from assisting him by staff of Sunnybrook Hospital in Toronto.  The staff just stood there watching the gentleman die while physically holding back the daughter because of these three letters: DNR..  How terrorizing that I still have recall of this..

I recently had a scenario of  how DNRs are obtained.  I am still reeling over it.  If staff suspects that a family member will oppose a DNR hospital staff will just go behind the family member's back and get it anyways.  It isn't even in writing.  Just a notation on a patient's chart: DNR.  There is a trio of doctors at VGH whose mandate is to convince patients to agree or even if a patient doesn't know what he is agreeing to but agrees that he understands it is on his chart forever never to be questioned again.

Randy had a severe traumatic brain injury and as time goes on he is susceptible to suggestions i.e. undue influence.  However, one thing that Randy is consistent is when you ask him about Dr. Dunn his assigned doctor because you can't have a family doctor when you are in care is his consistent "the finger."

Why is this an ongoing issue (rush) not only at VGH but also at GPC.

Randy is only 54 years old; unfortunately he is a quad but his quality of life is good, he has no diseases nor is he in pain.  The traumatic brain injury left him with a spinal cord injury. He suffers from depression but who won't.

Randy is in a system that has a halo of goodness around it. It promises to do no harm.

At the last open board meeting Kip Woodward said something had to be done to prevent extraction of DNRs while patients are in Emergency but he hasn't done anything so far.

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Dr. Patricia Daly

What a joke her office is.  Two Thursdays ago I went to see her at 601 Broadway to discuss a communicable disease and was told that she does not talk to those off the street.  So who does she talk to.  I go all that way the least she could have done is talk to me.  She is as bad as Moira Stilwell the MLA   who locks her offices so no one can drop by.So what happens if you do not have a phone or an email address.  Coincidence both of them are doctors, working and living in cocoons in gated communities.

I wrote a note addressed to Patricia but  her assistant would not take it so I tossed it unto one of the low tables at the entrance to her offices. Patricia never got back to me going on two weeks so it is time to report my concern..

Dr. Patricia Daly is the Chief Medical Health Officer and Vice President of Public Health.. Someone who is paid to look after our public health.

With flu season upon us and all the media surrounding the rights of hospital employees to have a flu shot or not, I wanted to tell Dr. Daly that it isn't the employees she should be worried about, rather it is the public that has access to hospital faciliities as visitors, vendors, volunteers, etc.  I wanted her to use her position to put masks at all hospital entrance ways and make it a requirement for everyone to wear one. She may not be able to force union employees to wear a mask but  because of her unfettered power she can force everyone else to wear one.

And I also went to Emerg at VGH and told one of the doctors there who said I was being agressive and he called for security. The only thing employees of VCH can do effectively is phone security.  Can't deal with something simple, phone security.
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